1. gismo

    gismo Registered User

    May 28, 2007
    3
    Northumberland
    Hi, This is my first visit today and already, having read several messages, I have tears in my eyes. I have just read Adrian M's message about moving his mother to a home near to him as apposed to finding a suitable home near to her friends. My sister and I are just deliberating over a similar situation. My mum was diagnosed with early dementia 18 months ago. She took herself off to her GP having her own concerns about her memory (in particular losing a whole day while on holiday). She went on her own for a brain scan and other tests and only told me when her Consultant said he would like to speak to us. She has never been one for dwelling on ill health, quite the opposite. She has been very independent since my father died nearly 15 years ago. She walks regularly, goes on holidays is in several groups and helps out in a local charity shop. Me and my daughter stayed with her for a few months while my husband was renovating our new home and it was at the same time that she had taken herself off to be investigated. I did notice at the time that she was more forgetful but I put that down to us being around and interupting her routine. I had to repeat things that were happening lots of times and she would often ring me at work to clarify what was going on later that day. I was with her when the Consultant visited her for the first time at home and I found his attitude disturbing at the time. He seemed to make my mam feel very small and she looked so old and fragile in his company. I was even cross when she lost a point because she said it was winter instead of autumn( it was a cold wet wintery day in October) Winter apparently didn't start until the 31st!! Still I guess he had his reasons and a protocol to follow. She scored enough points to be able to start on medication but the word "dementia" was never really used. I only saw it on a letter from the hospital under her problem list. She also has diabetes although this is controlled by diet at the moment. Any way since that time she has been ok - though sometimes seeming a little depressed. Her GP tells her she needs to get out more!!. I speak to her regularly and visit every week as does my sister and sister in law. I have two brothers who visit when they can as well. She has many friends, but she dosn't like to bother them - "they are all so busy" so she does spend quite a bit of time on her own and she seems sad when I speak to her at these times and I am filled with guilt. She has to sit a yearly driving test and she is dreading losing her licence which she knows will come. I have just come back from a short break visiting family and while there I noticed a big change in mums condition/personality. She just seemed very withdrawn alot of time in company and would sit saying nothing and answering in questions in just a yes or no. Her behaviour sometimes was child like when thing wern't going her way or her routine changed (especially around food) I won't go into detail I could still be writing tomorrow. My daughter of 6 sometimes had to take a back seat so that we could keep mam happy. She was constantly losing her glasses and handbag. I came home feeling very guilty that i had been so fustrated with her at times and telling my husband and sister I felt like I was discussing mam behind her back and felt so awful but I had to off load what had been happening. This in some ways has made me feel a bit stronger though as I realise now that she is really suffering from this horrible condition and i at last had the courage to discuss with her that she may be better off moving to somewhere where she will have more company all the time if she wants it. She always said that she would move when she was unable to look after her house, but now I think that she would benefit from having people around her now - not when she is physically unable to look after her home. If she waits to long, she won't get the benefit of company as her mind may not be as able then. I think she needs to be somewhere where she can socialise while able to appreciate it. I don't mean move her into a home but somewhere like sheltered accommodation/warden controlled. For her own benefit. She has been to look at a place near to where she lives now and likes it and has put her name down. What I am not sure about is - could this make her condition worse, the stress of moving, although we would sort all that side out for her, I know she will start to worry about everything and would this be worse for her that staying where she is and being lonely at times? I could sit and write all day as there are so many things to say but I feel better already having got all of this written down and look forward to hearing your comments.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Dear Gismo - welcome to TP

    I do think a move can highlight problems: not so much make them worse, but make them more obvious. When someone is living somewhere that they know very well, memory problems can be less obvious: put them in a new situation and add in a reduced ability to make new memories you're bound to have problems. Having said that, I personally really wish that my mother had moved before she got to the state she was in when she did finally move. As it was, she ended up having just over a year in her extra-care sheltered housing before she had to move to a nursing home. If she hadn't lost her mobility, though, she would probably still be there. She definitely would have got more out of extra-care had she been more mobile.

    Jennifer
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Gismo

    Welcome to TP. It' so difficult when a parent doesn't want to lose their independence, but needs more help.

    I think you have to consider seriously how long you think sheltered accommodation would be enough for her needs. It sounds as if she is deteriorating quite rapidly at the moment, and having to consider diabetes is an added problem. At the moment she is controlling it by diet, but for how long will she be able to cope with that?

    You don't say how close you are to her. In sheltered accommodation she is going to need increasing support from you. The wardens as a rule are only there for emergencies. They do not help with meals, or administer medication. (I know there are exceptions, extra-care ones like the one Jennifer's mum was in obviously provide more support.

    Add to this that the move will undoubtedly disorientate your mum.

    What I'm trying to say is that it might be worth considering leaving your mum where she is for a while longer, then going for the residential option.

    I'm sorry, I'm not being negative. On;y you know your mum, and how she would react. I'm just trying to give you some other aspects to consider.

    Let us know how you get on,
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Gismo,

    Welcome to TP which I'm sure you will find is a big help. Your post reminded me of many of my feelings - such as the guilt, and feeling bad about talking about your Mum to others, even family. These things are part of the dreaded package, I'm afraid. We all try NOT to feel guilty, because we do the best we can for our loved ones, but guilt is very persistent nevertheless. Talking about the person becomes inevitable as we struggle to work out what to do and how to best achieve the right outcomes for the person we love.

    [QUOTE=gismo] I was with her when the Consultant visited her for the first time at home and I found his attitude disturbing at the time. He seemed to make my mam feel very small and she looked so old and fragile in his company.

    Her GP tells her she needs to get out more!!.

    I think you will quickly discover (if you haven't already!) that doctors are often not much help. It is true some people have brilliant doctors who are wonderful supports, but many doctors seem to have very little understanding of, or empathy for, sufferers of dementia and their families. It certainly sounds like your Mum is (was?) leading a full life so telling her to "get out more" is (IMHO:) ) a pretty silly suggestion.

    she seems sad when I speak to her at these times and I am filled with guilt.
    I noticed a big change in mums condition/personality. She just seemed very withdrawn alot of time in company and would sit saying nothing and answering in questions in just a yes or no.


    This sounds like depression which is common in older peole. As your Mum notices changes in herself (and the early part of your post shows she is very aware of these changes) she will be feeling very depressed about what life has to hold for her both now and in the future. It might be a good idea to see if she would see the GP (perhaps you or a family member could go with her?) about the possibility of ant-depressant medication. It can make a big difference for the better.

    Her behaviour sometimes was child like when thing wern't going her way or her routine changed (especially around food) I won't go into detail I could still be writing tomorrow. My daughter of 6 sometimes had to take a back seat so that we could keep mam happy. She was constantly losing her glasses and handbag.

    The behaviour you describe is very typical of dementia sufferers. In many ways they do revert to childish behaviour. They become intolerant; unable to put up with even small things that are not what they want. Being unable to find things or remember what she has done with her possessions is another common trait.

    She has been to look at a place near to where she lives now and likes it and has put her name down. What I am not sure about is - could this make her condition worse, the stress of moving, although we would sort all that side out for her, I know she will start to worry about everything and would this be worse for her that staying where she is and being lonely at times? .[/QUOTE]

    Your Mum is obviously very good about accepting the changes that are occurring in her. Putting her own name down for accommodation, and going to see the doctor in the first place, are testaments to that fact. Please be grateful for this!! (I'm sure you are!) Many TPers are faced with loved ones who have NO insight into their condition and insist they are "perfectly all right" long after they have been diagnosed. It just adds to the burdens their Carers have to carry.

    Like others, I would have some concerns about her deteriorating after she moves - or perhaps finding it harder to cope. Even small things like the relocation of rooms, household objects, etc. are difficult to cope with. Dementia sufferers cannot learn anything new (or at least have difficulty doing so) and therefore new surroundings do pose problems.

    On the other hand, it is obvious she will have to move somewhere (and fairly soon from what you've said) so I guess the question is: does she move to sheltered housing now with another move (perhaps to a nursing home?) later??

    Have you (and she ) considered the sort of accommodation where she has her own room and bathroom etc. but has meals supplied and household chores (including laundry) done? Here in Australia we call these Hostels but I don't know the UK term for them.

    If you do go that route, try to find one with a Nursing Home and / or EMI unit attached so that, if she gets worse over time, she can stay in the same place (just move to a different part of the same complex).

    I do feel very sympathetic for you, your family and your poor dear Mum. My dear Mum is in the same situation (ie. has dementia) and it is a heartbreaking journey for us all. Having said that, you WILL cope! We all do! Just take one day at a time, as much as you can, and give that "guilt monster" (as we call him on TP) a good kick when he shows his face!! :)

    Thinking of you and sending you the best of caring wishes.
     
  5. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Gismo

    Welcome to TP.

    What a remarkable lady your mum is. She clearly had a good insight that something was not quite right, to take herself off to the doctor and hospital was very brave indeed.

    I don’t have much to add what has already been said, just another view on your mums apparent difficulties with conversations. My mum has this difficulty, and it comes down to her poor level of concentration, and remembering what has gone on before in the conversation.

    I would also agree about thinking very carefully about moving mum to sheltered accommodation. If mum is coping OK in her own home at the moment, any change can be huge to someone with AD, you may find that a move such as this will only cause more confusion in the long run.

    You say that mum has quite a good social life, it would be preferable if she can keep this up as long as possible. Also you have the option of day centre facility or seeking out a befriending group through your local Social Services. Meals on wheels are also an option if you think cooking and getting her diet right for her diabetes might cause a problem in the future.

    I appreciate you want to make things better for mum, that’s only natural, but I would go slowly on any big changes for the time being.

    We came so close to moving mum to sheltered accommodation, but I’m glad we didn’t do it now, it would have only been a few short months before another move to a NH. My mum now lives in a NH, which has full EMI facilities on another floor, so when the time comes, it will simply be a move to another area of the NH.

    Keep in touch.

    Cate
     
  6. Charlyparly

    Charlyparly Registered User

    Nov 26, 2006
    221
    Lancashire
    Hi Gismo,

    Your Mum sounds a star. Really, she does.

    Going to see her GP and getting herself checked out because of worries about her memory takes some guts.

    I have to agree with the others that a permanent move at this stage may not be for the best.

    What I would suggest you consider, is the option of day care, so that your Mum can get out a few days a week and have her meals made/meet new people etc.

    She would then have the benefit of both worlds in that she would still be able to go back to her own home at the end of the day, at least for the time being.

    As and when the time comes, both you and your Mum would then probably feel much happier about her moving permanently. She may even suggest it herself once she has got to know the staff, other residents and the building itself etc.

    To find out which care homes offer day care in your area and what these are like, go to http://www.csci.org.uk/

    Keep in touch and let us know how things are going.

    Charlyparly :)
     
  7. gismo

    gismo Registered User

    May 28, 2007
    3
    Northumberland
    Thank you to everyone for their very helpful and supportive comments. They have given me more strength and we have moved a little up the ladder of trying to get some sort of help/advice/support. Mum has agreed and is happy for my sister and I to go and see her GP and have a chat to him about our concerns. She has been visiting him a lot recently but for nothing in particular - I think a security type visit. She told us that she had been feeling sickly and has cancelled her holiday because of it. Her GP told her that it could be her hiatus hernia - which she has no recollection of having - only having been diagnosed with it a month ago! I think she cancelled because she was worried about forgeting things when she is away - she had mentioned this to me before she cancelled. However, she seems quite happy to have cancelled so thats ok. I said to her that we would like to be more help/support to her and by speaking to her GP hopefully we will begin to develop a relationship with him where we can all be involved in her care. She is more than willing for us to find out if there is any support network nearby and I do think that some sort of day care would help her enormously. We are hoping to go and look at a new development of retirement type apartments which have a nursing home and EMI unit attatched, just to look at, to see what they have to offer but I take on board all your comments about her possibly being better off staying in her own familiar surroundings. We are planning a girls pamper weekend, just my mam sister and myself. Initially mum said September would be a good time but just yesterday she asked could we go earlier in case her memory has deteriorated by then! She is obviously really concerned that she is deteriorating herself. It is so sad that she has all this to face- that she has enough understanding to know what is happening to her - How cruel is that. You work hard all your life to enjoy your retirement and then have to face this horrible fate!. Being so physically fit (for 73) as well she should be having so much fun off on her rambles and holidays. Now I feel this is starting to come to an end for her. Thank you again for all your comments - it is great to know that what I feel, others have had the same feelings and I am not alone. Thank you
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    Dear Gismo.

    I`m so pleased you have been helped by all the different advice you`ve had from TP members, and really pleased your mother has agreed to you all sharing in plans for her future care.

    I understand how her plans for the future have been affected, as my husband is 74, was very fit and active until Alzheimers developed, and our life and plans for the future have been dramatically affected too, as have so many members of TP.

    Your mother sounds as if she is very aware what`s happening to her and I hope she gets to the doctors asap, so if there is anything available to slow down the progression, she will get it. I felt so sad for her, reading your post, but pleased she had such a loving and understanding family.

    I hope you have a wonderful, girl`s pamper weekend, it sounds just the thing to give you all a boost during this very stressful time.

    Love xx
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    The facility you describe sounds very much like my mother's place: 1 bedroomed flats in a purpose built block next to the nursing home (which is where she is now). The advantage that I have found is continuity of care: the people that were providing her domicillary care (which consisted of getting her up in the morning, bathing and dressing her, giving her breakfast and medication and then reversing the process in the evening are still partially involved in her care, although there are many other staff members. Also, importan for me becasue I am along way away: they know me.

    Jennifer
     
  10. Hi Gismo.

    Well I don’t know if this helps you; but I will write it anyway.

    I have known my new wife for ten years now; and at our ages we never considered marriage as we both were independent types; her a widow, and me a divorcee of 25 years of single free life; having a ball etc, kids all grown up.

    Then about a year ago she developed dementia; but she still lived in her own house doing all she had done most of her life; then she started doing all kinds of odd things; like making tea that tasted of mud, which when I investigated and found potatoes and carrots in the kettle; these she had put there while cooking her meals, some in the saucepans, and a few in the kettle etc. Instead of watering her flowers, she would Hoover them with the vacuum cleaner thinking it was the garden hose pipe, spraying bleach on the carpets instead of carpet cleaner etc, the list is long.

    To cut a long story short; her son did nothing for her, and we have never liked each other anyway; so I warned him; if you do not look after your mother I will; and he never bothered, so we married in February this year; only about four months ago.

    I realized that she knew her home well; and her doctor did not want her to leave her home because she felt that my wife would not be able to cope with new surroundings; but I pointed out that she cannot cope in her old surroundings so what is the difference; but at least she now has 27-7 help and care.

    It is true that my wife did not like her house anymore, and never wants to return there ever again; and she is delighted living with me and my large family always around from time to time; she loves going out to the park feeding the ducks and birds and seeing all the colourful flowers all around her; she even thinks the park is her own garden.

    She is happier today than she has been for years; even though she has dementia; I see her smile, I hear her laugh, I feed her well and care for her, and she often tells me that she is so lucky; now Gismo; if she has dementia; and doctors think they have no idea of what is going on in her head; I beg to differ, I honestly believe that dementia may destroy some feelings and knowledge; but not all of it.

    You mother was independent for a long time, she seems to me to also know herself well, and an honest type of woman, much like my wife, and I always tell my wife the truth, which I think your mother will also prefer to know.

    I know my wife would soon know if I lied to her; even though she may have dementia now; but she is still not stupid, and knows things are not right with her; I think your mother, just might be the same; and I do believe if you tell the truth; they understand better what is wrong with them; and can handle it better for knowing the truth.

    Dear Gismo; at the end of the day, you have to decide what is best, and what is what; but give your mother credit, she still has capacity, and she still feels and wants what she always had and wanted. I think as the months go on; you will find the best way to go.

    Dementia is just dementia to me, it may never go, as they say, and tell me all the time, but she still has much to live for, and much still to enjoy; I know this is true of my wife, but alone; my wife would probably already be gone, instead everyday she see’s her flowers and her wild life, and everyday she is happy, even if she is helpless.

    Your mum could still have a happy ending to her life; hold out your hand to her; and give her one last chance, and you can give her that chance.

    I am not sorry at all I married my girl with dementia, the work is nothing at the end of the day when she smiles, and I know she had another good day.

    Your mother sounds special and strong and wise; and she knows more than you think; I wish you all; the best of luck and you never know what luck will come your way; so stand with her; and help her all you can.

    They say you have nothing to fear but fear it’s-self.

    I knew my wife had dementia before I married her; not years later; and I had no fear of what I needed to do and the work involved; and that was make her happy, feel safe and secure, and protect her till the end.

    I get angry at times like most people; but never at her; just the system that denies her help and treatment, yet even then, I know I must go on alone and do what I must for her, system or no system.

    Think of your mother; then think of yourself in her position, think about what you would like your family to do for you; and then do it for your mother; you will never regret it; trust me.

    She needs you now, remember what she did for you...Micky.
     
  11. gismo

    gismo Registered User

    May 28, 2007
    3
    Northumberland
    Thank you Micky, you sound like you are doing a wonderful job looking after your wife, she is a very lucky lady!
    I know I think all the time that I must make to most of time now and spend as much time as possible with my mam. I realise how precious time is. I do often wonder if she realises what this terrible condiotion will do do her other than loss of memory and have thought of asking her what she would like us to do for her in the future when things arn't good but I am afraid I havn't that much courage yet. You are right, she probably does know but on the off chance she dosn't realise, I would be cruel discussing it with her, at least if she is unaware, she has less to worry about. On the other hand if she does know, I am being cruel not talking to her about her future. I suppose i am being selfish really. Keeping her in her own home, but with plenty support/company does seem the best option, hopefully we can do this. She thinks it would be nice being in somewhere -purley for the company- I have mentioned to her what others have said on talking point that it may cause her considerable distress with a change of surroundings but she answerd "these places are so small you havn't got space to loose anything anyway" and laughed! We'll just have to see what happens.
     

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